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Putting family at the center

Family-centered care gives St. Jude families an active role in decision-making.

When coming to St. Jude Children’s Research Hospital, each parent grapples with challenges regarding medications, medical procedures and boo boos that cannot be kissed away. For the parents of children who are battling devastating diseases, so much is out of their control.

But thanks to the hospital’s philosophy of family-centered care, parents and their children are given a voice and a sense of control during an arduous time.

“As parents, our mission is to take care of our kids. We lose such control when we walk through the hospital’s doors—not to the doctors, but to the disease,” says St. Jude parent Heather Durham. “To be able to say something about how your child is cared for is paramount. Being asked whether my son wanted blue Jell-O or red Jell-O may seem very small, but it meant a lot that I had a voice in his daily care.”

Counseled by the council

Family-centered care extends far beyond dessert preference. It is an approach to care that seeks answers to the direct needs of patients and their parents by asking them for input and responding in kind.

“It is about respecting the unique relationship that the family has with the health care team and validating the strengths that each family brings to the hospital when their child is ill,” says Alicia Huettel, RN, St. Jude family-centered care coordinator. “In a traditional health care delivery model, the system—whether it is the physicians, nurses or other staff—has been what dictates care. Family-centered care is different in that it puts the family at the center of decision-making, empowers them and honors their preferences.”

Huettel says that this philosophy has always existed at the heart of St. Jude, but now health care workers nationwide are putting a name to it and finding new ways to evolve and advance this mission.

To help nurture this approach to care, the hospital established the Family Advisory Council. Family members of patients hold two-thirds of the seats on the committee, and faculty and staff from hospital departments make up the remaining spots. Durham serves as chair of the group.

Through the council, hospital employees meet with parents and patients to discuss an array of topics that affect patient care from construction projects to the way the pharmacy provides medicines to patients after hospital discharge. “The process creates pathways of information and communication,” Huettel says. “We’re getting their input on the front end, discussing options and making decisions together.”

John Curran, director of St. Jude Design and Construction, says the council provides a helpful sounding board. “We don’t want to build things that parents don’t want,” Curran says of the group’s feedback. “Before the council, we formed focus groups of parents and patients to discuss projects whenever we could, but now we are getting consistent input by working as a team.”

When Curran and his team were creating new campus maps, he presented them to the council. “They offered insight on how to make them more readable,” he says. “They know what it’s like to be parents who are trying to find their way around the hospital for the first time.”

A fresh outlook

Heather Durham says parents can offer a fresh set of eyes on day-to-day life at St. Jude that might not be seen by hospital employees.

“The response of the nurses, doctors and other staff that we’ve met with has been amazing,” she says. “They are thirsty for our opinion—even when it is something as small as ‘Add memo pads in the rooms for parents to write down their questions while they are waiting for the doctors.’ By sharing these real-life experiences that parents have each day, we help make everyone’s time at St. Jude a little better.”

St. Jude parent and Family Advisory Council member Teresa Farris agrees. “Communicating and understanding our family’s journey extends to after therapy has ended as well, and family-centered care supports us as we continue on this path,” she says.

Huettel and her team employ several tactics for sparking dialogue between families and health care workers. Parents serve as active members of various hospital committees. Focus groups are held to obtain the input and opinions of parents and patients. An informational newsletter is also published each month to address topics most pressing to St. Jude parents.

In addition to reaching out to parents for feedback, Huettel and her team look for ways to strengthen the initiative by inviting evaluators to assess the program as well as by holding advanced training and seminars for hospital staff.

“The idea of putting the family at the center of care is not new to St. Jude, but now we’re putting actions to the philosophy and finding ways to move it forward,” Huettel says. “There is a business case for it, because including parents in the decision-making on the front end increases satisfaction as well as improves quality and safety. But more than anything, we’ve embraced the family-centered care approach because it’s the right thing to do.”